AASLD '06 Abstract: g1 48

[Upbeat]

Extended Treatment of 72 versus 48 Weeks for Chronic Hepatitis C Patients with
Genotype 1 and High Viral Load using Daily Consensus Interferon and Ribavirin
P. Kaiser1; H. Holger1; L. Bissinger1; L. Bettina1; B. Sauter1; M. Gregor1
1. Medicine I, University of Tuebingen, Tuebingen, Germany.


Objective: Treatment of naive, genotype 1, high viral load chronic Hepatitis C
patients with pegylated interferon and ribavirin (RBV) results in sustained
viral response rates of about 30

[Kalio1]

Remember Magnum took MEGA doses, I believe three times the recommended dosages. He did have a horrible time, the treatment zzz is talking about isn't nearly that much Infergen per dose.

I hope Magnum posts about it, I also hope he is feeling better now.

[sfbaygirl]

Great to have you here, it is a wonderful forum. I learned so much and don't know what I would do without the support here.

Some dr's give a standard 800 Riba. Most dr's base the Riba on weight. I am 140 ? lbs, so I take 1000 mg of Riba a day. There have been a few here who relapsed b/c they may not have had enough Riba. See Fishdoc's Consult in the archives. If your Hgb doesn't drop during tx it may be a sign you aren't getting enough Riba. How much do you weigh?

[Kalio1]

PS. yes, definately having Cryo is one reason he is going this route. The good news is, the treatment will not only rid you of this virus but the cryo too.

[Kalio1]

Sorry about the gender mix up! My apologies. Unfortunately there just isn't much in the way of studies or "track record" evidence to give you as this is a relatively new game plan. The "longer and stronger" approach is working, that is why your doctor is recommending it. Plus it sounds like you have a doctor who really is on the cutting edge of treatment. You want to kick this thing the first time, trust me. Relapse sucks.
Treatment affects everyone differently, it very well could be you won't have severe side effects, you just have to bite the bullet and try it. As I said, my doctor is going this route now too but a year and half ago he wasn't, that is how new this protocol is. I met a guy in the waiting room on it and he said that it was easier than standard treatment. That is just one guy, but please, try to remember sites like this attract those of us that are having pretty bad side effects but those who aren't having a hard time are out living their lives and not looking for answers to their side effects on the internet.
I know it is scary, but somtimes it is worse worrying about what will happen than it is actually doing it.
I'd be so grateful I had a doctor like yours who isn't going to pussyfoot around and will do his level best to treat you ONCE and get this virus out of your life forever.
If my second tx doesn't work, I will be joining you with the regimen you are on.
"there is nothing to fear but fear itself" has been my mantra since I was diagnosed with this demon virus and found out I had cirrhosis. That and the little engine that could's mantra
I think I can I think I can. I say them over and over in my head and it honestly DOES empower me.
You can do this, gather all your power and fight this thing.
The best tool is a good doctor and a positive can do attitude.
Stay positive, you can slay this dragon.

[copyman]

hi, do you have to take a shot everyday for the whole 72 weeks? did you have a biopsy and what did it read? does insurance cover this? i still say for "first time" patients if you do not have much damage to try and clear at 4 or 12 weeks with standard tx, if that does not work then wait for better tx. hope the decision becomes easy for you and me. like i posted above i also keep putting off starting. best of luck to you.

[FlGuy]

I apologize if my post in this thread caused you alarm. My reaction was because the participants were first time treatment people and not necessarily proven to be difficult to treat.  I suppose the cryo does change the equation for you.  I think it was Kalio who mentioned other people who did a similar tx regimen, Magnum is one.  I think he did 15 mcg daily and had a pack of trouble.  Not to scare you, but to offer some of the experiences of other maybe you could search the archives for some of Magnum's threds on the subject.  Or, maybe he'll stop by and offer some of those expereinces.  It's quite a committment you're about to make.

[zzzztime]

I don't know about the Riba. Should I be taking more? I work in the medical field, in orthopedics.
I have been hanging around here on and off for a while and have been so impressed with all of the help and support there is here!

[sfbaygirl]

Sorry about the gender mixup. Unless someone has a gender specific nickname it is hard to tell sometimes! I think most of the "he" statements were in reference to your dr.

I just read you have Cyro with the Hep C. This may be another good reason to treat more aggressively.

Also I was wondering why you are taking only 800 Riba. Is this weight based?

Welcome to the nut house!

[zzzztime]

I'm glad you posted. This is the most info I've seen about this tx. Do you know where I can read more about it? What you are saying sounds exactly like what he is doing. My other concern is the dose. It's 15mcg. daily with 800mg riba. I think the normal dose of infergen is 9mcg 3 x/wk.
FYI I'm 46y/o female, it was wierd to read about myself as he.

[sfbaygirl]

When you put it that way it makes lots of sense to do it once and have a much better chance of SVR. I was looking at my 10 week PCR today and wondering if I should extend. Going 48 weeks and NOT clearing would be worse than just extending and getting it over with.

I hope you can work zzzz while on tx. Many here do. I wasn't working when I started and don't think I could have now. What do you do? Until you start you will have no idea how the meds effect you. Perhaps you will have minimal sx. Hope so.

[Kalio1]

If you read the the tudy upbeat posted at the top of this page, you can see what your doctor is talking about. There won't be studies yet, this approach is pretty new. It will greatly improve your chances of clearing the virus.

[zzzztime]

They have not replaced my doc yet. The liver clinic is still there and a physicians asst. is seeing the patients under the supervision of a doc that comes in every other Friday afternoon. I have never seen him. My doc said that he uses the double dose of infergen for all 1a's. He said he feels there is a much less relapse or nonresponder rate.

[sfbaygirl]

Hey Girl! What's up with you? We haven't talked in a while. Sent you an email a few days ago. Haven't checked mine in a few days.Lol

I think zzzztime's dr. left, or did I read that incorrectly? Don't you think txing so agressively the first tx is excessive or not? I know I would do it that way if I relapsed, but aren't there lots of people on infergen that stop b/c of the sides?

[Kalio1]

My doctor wanted me to do the same regimen if this tx fails. He says his patients, like those in this study, did not report more side effects than those on the standard treatment. give it a try. If it turns out it is too hard, speak to your doctor about it.
Try not to worry too much before you have tried it. Sounds like you have a doctor who is treating you in the best way he knows how, he also sounds like he is on top of the latest protocols.

I relapsed so if I had it to do over again, I would have treated more aggressively the first time.
Sometimes our fear of it is worse than the actual experience of it.
Good luck to you. Keep us posted.

[zzzztime]

Does anybody know the percentage of 1a's w/high viral load that do clear the virus and stay that way

[sfbaygirl]

I don't know about that stat. But we do know we have about a 50% chance of SVR. What does your clinic say about your rates of SVR? They have to be better, I would think.

When are you going to start? At first it may be hard, it was for me, but after 6 months it is better. Boy, that's a great endorsement, huh? LOL  Worrying about it was worse than getting the sx's for me.

[sfbaygirl]

Wow! I also am geno 1a and had a high VL. My dr gave me pegasis single dose to start. I was UND at week 10, my first PCR. Is there a reason your dr. wants to tx for 72 weeks? I can understand double dosing at first, but why Infergen? I am no dr and no very little about infergen, but wonder why so aggressive? Since he has left you with this regimen, who will monitor you? Is the new dr. on board with this plan?

[zzzztime]

i dont know about the svr rate. When I have asked his nurse if there was any info or studies available to back up his treatment plan she said no, only what he knows. So that has kind of bothered me that there is noone else to talk to about it. The nursed at the drug company can't comment at all because he is exceeding the rec. dosage and I don't know of any othr doc that treats this way. I was going to start last Friday but I put it off because my daughter is having sinus surgery this week. Actually I think I just keep looking for excuses not to start. I do work and was planning on trying to work thru tx. When Iasked the nurse how many of her patients continued working on this dose she said not too many were working. they are mostly people who have commited 72 weeks just to clearing this virus.

[Kalio1]

I have only heard of problems with Infergen from a few who took large doses.
I think his doctor is using a "cutting edge" approach. It could be ZZZ has some damage going on and that is part of why he wants him to do 72 weeks. Also the new studies do show a much better SVR rate using that approach. His chances of clearing jump almost 30%. If he relapses he will end up doing 96 weeks if he does two rounds, so 72 seems short from that POV.
I think his doctor is a bit ahead on the learning curve than most docs and we will see this more and more. Until a newer treatment is actually proven and available anyway.
Relapse you end up doing that long or even longer, so to me it makes sense to hit it that way the first time since his chances of clearing SOC are around 50%.

Also we don't know what his dosages are, I was told the smaller daily doses are quite tolerable compared to the once a week. I hope I never have to find out!
If this doesn't work, that is the way my doc wants to go.

[zzzztime]

This thread is not too encouraging for me. I also have my meds in the fridge, trying to get the nerve to start. However my drugs are the daily infergen & riba for 72 weeks and the infergen dose is a daily double dose. I am geno 1a with viral load 22,ooo,ooo. I have not had any treatment so far. I also have a well known doc. that treats very aggresivly. Or I should say had a doc, he's leaving the city but he did order my meds at last appointment. I just don't know what to do. Is there any body that has tolerated or even done this treatment.

[FlGuy]

And before scopes they used to do colon examinations with picks and shovels.  The point I was trying to make that this tx does not make sense for a first time tx'er and I can't imagine anyone in that situation signing for the 72.

[Upbeat]

Thanks for clearing that up

[GrandOak]

Keep in mind that CIFN is Infergen.  All tx's using Infergen that I've heard about use a daily regimen for CIFN.  This study appears to be discussing this tx, which differs from the pegylated-IFN plus riba that has been the first tx used in most cases since 2000 when peg-ifn was introduced.

[Upbeat]

Good plan. I have thought about that approach myself.  I have decided to wait on better treatments and I am a beliver that for some the treatment is worse than the virus.

                                                         Ron